Sunday February 28

Had an ok nights sleep.   I was in and out / off and on throughout the night.   Woke up and waited for the rest of the house to rise.  Once everyone was up we walked to Eat N Park for breakfast.  

We got home from breakfast and Amber and Bobby started packing up the car.  It was great having them for a visit and spending time with the boys and the dogs.  I was really sad to have them leave.  

After they left we watched a movie on tv.  After lunch we decided to go to a movie for something to do.   We went to see Deadpool.  For those of you who know me....I'm not big into comics and that sort of thing.  I was able to find humor and laugh at some of the jokes but there were a lot of references I didn't get.   All in all the movie was pretty good.

After the movie we just came back home and had a lazy evening.  

My day was a little better.  I was pretty clear headed most of the day.  It hit me more at the movie theater then anywhere.  I'm not sure if it's all the stimulation or what triggers it.  I Got ready for bed around 7:30 and put on my tpn.   Went in and laid down in bed a little after 8.  Not too much else to report.

Saturday February 27

Woke up early to two hungry dogs.  Colin got up and took the dogs out for a walk to go to the bathroom.   He got back and fed them and started breakfast for everyone.   He made a nice little feast of pancakes, eggs and bacon.   Everyone ate breakfast, got showered and ready for the day.

We took them to the Monogohelia incline and did the lookout of Pittsburgh.  After that we went down to The Strip District to look around.   The boys had fun going to the different shops and seeing all the little trinkets.   They ended up coming home with balloon animals and flutes.

We came back to the house and had lunch.   Colin and Bobby went out to check out some different restaurants and breweries.   Amber and I hung out at the house with the boys.  We ended up meeting up with Colin and Bobby at Dave and Busters to run some energy off the boys.   We were there for about two hours.   They had a great time.   Caden even won the jackpot on one of the games for 1000 points!   They had a blast!!  They went in to the prize shop and each got a big pekachoo stuffed animal.  And we still have a bunch of points left on the cards for next time.

We got home around 9:30.   Amber went and grabbed something to eat and Colin and Bobby went out to get something too.   Amber, the twins and I watched a movie and went to bed.  

We had a fun day and it was really nice having company.  They are going home today and I'm going to be sad to see them go.   It was nice having them and fun having the dogs too.   I miss my puppies.   It was nice being able to cuddle with them and have them around.   

Friday February 26

Update....my levels are all going down and they are happy with the bloodwork and labs.   They are discharging me this morning.   The docs are happy with how everything looks and are going to adjust my meds accordingly.

I will update later.  I just wanted to let everyone know.  

Amber and Bobby came to visit with Carter and Caden today!!!   They brought Wyatt and Lilly with them!!  They got to the house around 7.  We went over to Rock Fish Grill and got something to eat for dinner.  When we were done with dinner Colin, Bobby and the twins took the dogs for a walk down to the candy store.   Amber and I met them in the car and picked them up and drove them home.  We got home and watched The Good Dinosaur.

I put on my tpn and went to bed.  It is so nice having them here and having the company.  We don't really have too much planned for Saturday but we will see what the day holds.

Thursday February 25

Went in to clinic first thing in the morning.  They did my bloodwork right away and took vitals.  My blood pressure was a little elevated but not too bad.  

We waited for the doctors to make their rounds.  When Dr. Gonoza came he said that my ammonia levels were elevated and he thought that may be the cause of the foggy feeling I've been having.   They decided to admit me to the hospital overnight for observation to be safe.   High ammonia levels can cause cognitive issues.  

They also decided to stop some of my medications so my liver isn't working so hard to process them.  Hopefully this will give us some answers.  The doctors make their rounds in the morning so I will post more when I know what is going on this morning.  

Wednesday February 24

Slept on the couch last night so I could watch tv and wouldn't keep Colin up.  

Took off my tpn, showered and Colin and i watched the other Redbox movie we rented.   Rock the Kasbah.  It was ok.  I wouldn't rent it again but I wouldn't say not to rent it either.  

I started the morning not feeling well and being all out of sorts.  My whole day was foggy.  I don't really remember anything I did.  Around lunchtime I put on my overnight bag and tried to take a nap.  I was unsuccessful.   I just laid on the couch in a complete zone.  At some point Chartwell delivered my supplies. I don't really remember when or even who delivered them.  

It was just a really odd day.  I'm still having issues.  I talked to Mary and let her know what was going on.  She talked to Dr. Cruz and they want to see me in clinic tomorrow.  I put on my tpn around 5 and I'm laying in bed.  I have to get up at 5 so we can be at the hospital at 6.  I hope to get some sleep and hopefully will feel a little better tomorrow.  I will update at some point after I'm home from clinic tomorrow.  Have a good night.

Tuesday February 23

Got up early and showered.  We left around 5:30 for my appointment.  Got to the hospital at 6.  They did the usual bloodwork, gave me fluids and we waited for the doctors.

The doctors made their rounds around 10.  Everything on my bloodwork is good.  They are adjusting my steroid dosage because my thrush is back and it's down my throat.  They put me back on antibiotics.  I'll be on them for 14 days this time.  Hopefully I don't have too many side effects from them this time.  I'm taking them at night to hopefully contribute to my sleep a little.  The new sleep medicine doesn't seem to be working either so I need to try to get in touch with Dr. DiMartini to see if there's something else we can do.

My blood pressure is still high which is another reason they are adjusting the steroids.  I have to touch base with Mary the end of the week to give her all the numbers and see if they want to adjust my blood pressure medicine at all.  

All in all that was the overview of my appointment.

We got home and rented some movies from the Redbox.  I fell asleep during the first one.  It was Bridge of Spies.  Not very good.  While the movie was on I got a phone call from the rental office.   They said they had our replacement fridge and asked if I would clear out the old one before they got there.  I emptied the fridge.   They came and brought us a new one and we swapped it out.  Hopefully this one won't freeze everything on the top shelf like the other one did.

They left and Colin took a nap.  I played a new game on my phone and hung out until it was time to get my tpn together.  I put on my tpn and face timed with Amber and the boys.   They were making rainbow spaghetti and wanted to show me how to do it.

After that I laid down and went to bed.  I got up about midnight and went to the couch.  I couldn't sleep.  I finally fell asleep around 3 and alept til about 4:30 and then fell back asleep from around 5 to 6:30.  Not a good night but I got a little sleep at least.  

Today is going to be cold and rainy.  Not sure what I'm going to do.  I will update later.   Have a great day!!

Monday February 22

Had an ok nights sleep.  Woke up got dressed and put on a bag of fluids.   When it was done I ran to target to get blades for Colin's razor.

I got home and started to watch a movie.  All of a sudden I felt a dripping on my stomach.  The wax seal had broken and my ostomy bag started leaking.  I went into the bathroom to change my bag.  In the middle of changing it there was a knock at the door.  I hurried and tried to put myself together no answered the door.   It was the maintenance guy.  Our refrigerator is freezing stuff so we put a maintenance request in because we can't risk my tpn freezing.  

He was there for a couple of minutes and left.  I went and sat on the couch to finish sealing my bag.  I usually hold the seal for about a half hour.   About 20 mins into it there was a huge surge of wet.   The entire seal popped off and it was everywhere!!  I ran to the bathroom, cleaned myself up and started all over again.  It was so frustrating.  It took me another half hour to clean up the mess.  My afternoon was completely shot after that.  I spent extra time sealing my bag and did a load of laundry which I dirtied between the leaking on my clothes and what I had to clean up.  Not a good afternoon.

Mary called to tell me they were putting me back on the antibiotic Diflucan and that I would be on it 14 days this time for the thrush.   She also said that Dr. Gonoza and Dr. Cruz are going to talk about adjusting my steroids and we would discuss it in clinic Tuesday. 

Chartwell ended up delivering my antibiotics right after Mary called.

After that I just sat on the couch and watched the Kids Baking Championship.   Colin grabbed dinner on his way home so I didn't have to make something.   By 5:30 I had to get my tpn on since we have to be at the hospital at 6 on Tuesday.  I put on my tpn, ran my antibiotics and went to bed around 8.  I was up all night.  I maybe fell asleep for an hour.   Needless to say I am exhausted today.  Hopefully I can nap or get some sleep tonight.  I'm at clinic this morning so I'll update a little later.   Have a good day.